Gloucestershire Primary Care Dementia Summit 24 th November 2009

1. Early diagnosis in dementia – the ethical and philosophical background: raising difficulties for me and youJulian C HughesConsultant in old age psychiatryHonorary Professor of Philosophy of AgeingNorthumbria Healthcare NHS Foundation Trust and Institute for Ageing and Health, Newcastle University Gloucestershire Primary Care Dementia Summit 24th November 2009

2. The Nuffield Council Report • an ethical framework • on diagnosis • Philosophical reflections on mild cognitive impairment • the place of dementia in the world PLAN

3. DEMENTIA: ETHICAL ISSUES • A Report from the Nuffield Council on Bioethics www.nuffieldbioethics.org

4. The Working Party • Began work in November 2007 • Members included those with expertise in medical ethics, front line care for people with dementia, law, old age psychiatry and neuroscience • Public consultation in July 2008 received over 200 responses • Testimony from experts • Deliberative workshop for 50 members of the public held in Birmingham • Report launched 1st October 2009

5. AN ETHICAL FRAMEWORK

6. An ethical framework for dementia • Six ‘components’ • A methodology for approaching ethical decisions • Two beliefs about the nature of dementia • A set of interlinked ethical values

7. An ethical framework: Component 1 • A ‘case-based’ approach to ethical decisions • Identify the relevant facts • Interpret and apply appropriate ethical values • Compare the situation with other similar situations

8. An ethical framework: Components 2 & 3 • Two beliefs about the nature of dementia • Dementia arises as a result of a brain disorder, and is harmful to the individual • With good care and support, people with dementia can expect to have a good quality of life – you can ‘live well’ with dementia

9. An ethical framework: Component 4 1. Promoting autonomy Autonomy is not just about ‘rational choice’ – it includes supporting important relationships, and supporting the person in expressing their values 2. Promoting well-being Well-being includes moment-to-moment experiences of contentment, and also objective factors such as a person’s level of mental ability • Promoting the interests of the person with dementia and those who care for them

10. An ethical framework: Component 5 • Acting in accordance with solidarity • The belief that people with dementia are fellow citizens and that we are all ‘fellow-travellers’ • Recognition of our mutual interdependence • Duty to support people with dementia and to support carers in their own exercise of solidarity

11. An ethical framework: Component 6 • Recognising the personhood of the person with dementia • A person with dementia is the ‘same’ person, despite changes in mood and behaviour • A person with dementia is of equal value to a person without dementia

12. Ethical Care

13. What is ethical care? • Diagnosis • Information, communication, signposting • Ongoing care and support • Acute hospital services • End of life palliative care 13

14. Diagnosis • A timely diagnosis - for person and family • Good quality assessment and support • from initial concern • Research needed on why some cultural groups appear hesitant in coming forward • Encouragement to share information

15. Information, communication and signposting • Need for • Appropriate information • Practical support • Emotional support • Access to services • Dementia care advisor pilot

16. Ongoing care and support • Flexibility to individual needs • Importance of developing relationships with care workers • Importance of care for the ‘small things’ • Treating the person with dementia with dignity

17. End of life palliative care • Palliative, supportive and person centered care • Less likely to receive good quality palliative • Need for appropriate services • Lots of development nationally The Working Party of the Nuffield Council welcomed the commitment in the English Dementia Strategy to develop and evaluate such models

18. BACK TO DIAGNOSIS • ‘Early diagnosis is so important – so that I am involved in planning my future’ (Nancy McAdam, consultation respondent) • ‘I was told very early that I have dementia. It was too early. My life would have been much easier without knowing my diagnosis’ (Ernie Allan, consultation respondent)

19. LIVING WELL WITH DEMENTIA: A NATIONAL DEMENTIA STRATEGY (LONDON, DEPARTMENT OF HEALTH, 2009) • Objectives: • 2. Good-quality early diagnosis • 3. Good-quality information for those with diagnosed dementia and their carers • 4. Enabling easy access to care, support and advice following diagnosis

20. BENEFITS OF EARLY DIAGNOSIS(BAMFORD ET AL (2004) DISCLOSING A DIAGNOSIS OF DEMENTIA: A SYSTEMATIC REVIEW. INT J GERIATR PSYCHIATRY 19: 151-69) • relief of understanding what is happening • opportunity to access appropriate support services (including welfare benefits) • advantages of having time to plan • value of developing a trusting relationship with professionals

21. ETHICAL ISSUES • case by caseness • autonomy interests • well-being interests • personhood • solidarity

22. TIMELY DIAGNOSIS • ‘…for conveying a diagnosis to be helpful and appropriate, it must be timely, with benefits balanced against risks. Where a person stands to be distressed to the point where no benefit can be derived, then even an early diagnosis is perhaps not a timely one.’ (Alzheimer’s Society response to consultation)

23. REPORT: §3.17 • ‘…it is crucial not to make assumptions about the effect the diagnosis will have on the person with dementia. …the vast majority of people with mild dementia do wish to be informed about their diagnosis (even if family members think they do not), … fears as to the impact of this information on the person’s general mental health are generally unfounded.’

24. REPORT: §3.18 • ‘We conclude that people should have access to good quality assessment and support from the time they, or their families, become concerned about symptoms that relate to a possible diagnosis of dementia’.

25. REPORT: §3.19 • Differences between cultural groups • feelings of shame and stigma? • Cultural bias in cognitive tests • Need more research on the reasons why there is variation between cultural groups in readiness to come forward for diagnosis

26. REPORT: §§3.20-3.24 • The way in which a diagnosis is given (e.g. over the telephone!): • effects on personhood and well-being • Diagnosis as a process • Issues of confidentiality and the family • need to respect the person’s right to confidences being honoured (autonomy interests) • need to consider capacity very carefully • need to see in context of family

27. PHILOSOPHICAL REFLECTIONS Mild Cognitive Impairment

28. AMNESTIC MILD COGNITIVE IMPAIRMENT (O’BRIEN, J. (2008) IN OXFORD TEXTBOOK OF OLD AGE PSYCHIATRY) • Memory complaint, preferably corroborated by an informant • Memory impairment relative to age-matched and education-matched healthy people • Essentially preserved general cognitive function • Largely intact activities of daily living • Not clinically demented

29. MCI • Genetic or other biomarkers • Neuroimaging • Pre-dementia state suitable for treatment? • Enables planning and support (i.e. the advantages of early diagnosis)

30. MITCHELL, A.J. AND SHIRI-FESHKI, M. (2009). RATE OF PROGRESSION OF MILD COGNITIVE IMPAIRMENT TO DEMENTIA – META-ANALYSIS OF 41 ROBUST INCEPTION COHORT STUDIES. ACTA PSYCHIATRICA SCANDINAVICA, 119, 252-65 • Annual conversion rate – MCI to dementia or AD: 7% • Annual conversion rate – MCI to vascular dementia: 2% • Progression from MCI to dementia: <50%

31. NEUROPATHOLOGY AND NEUROCHEMISTRY • ‘It is … increasingly clear that the spectrum of diseases that cause dementia, whilst often considered as separate disease entities clinically, have a great deal of overlap in their underlying pathogenesis’ (Holmes 2008). • ‘It is difficult to define the pathology of AD precisely at present. The reason for this is that the individual pathological components typical of AD brains all occur to some extent in normal ageing’ (Nagy and Hubbard 2008).

32. CORNER AND BOND (2006) IN PPP • Rose diagnosed with: ‘very mild, not really dementia’. • ‘When we were told that Rose had this dementia we were just devastated, that’s the only word for it. Our world came crashing down around us and … we cried for days. We couldn’t bring ourselves to talk to…the kids…or anyone about it. It was too shameful for Rose’.

33. WHITEHOUSE (2006) IN PPP • ‘At the hundredth anniversary of the first case of what we have come to call Alzheimer’s disease, perhaps it is time to reflect on the individual and social advantages and disadvantages of these labels on the continuum of cognitive aging.’

34. THE PHILOSOPHICAL QUESTION • Normal versus abnormal ageing • The place of values • Hence, what is our attitude to the ageing brain? • What is our attitude to ageing?

35. BIOETHICS VERSUS PHILOSOPHY • Bioethics gives us some ways to behave in the clinic • On the whole, give the diagnosis in a timely fashion • Respect confidences, but assess capacity and remember the family context • Use culturally appropriate means to assess people • Philosophy raises questions about our own lives, which underpin our attitudes to ageing, ethics and early diagnosis • What is ageing about and how do we face it? • In the lives of others? • In our own lives?

36. WHITEHOUSE (2006) AGAIN • ‘The process of social deconstruction (i.e. ending AD as a label) cannot eliminate the suffering that accompanies the loss of cognitive capacity as we age but it can allow us to think of these processes in richer and deeper ways than the medical model allows us.’

37. CONCLUSIONS • Approach to ethical issues in dementia • Well-being and autonomy • Cases and context • Personhood • Solidarity • The standing of people with dementia in society • Ageing as a problem for me • And for you

38. MANY THANKS And thanks to the Nuffield Council on Bioethics